ACTION: Ask the Federal Government to Stop Oregon’s Medicaid plan from Denying Coverage of Autism Treatments

Three years ago the autism community persuaded the Oregon Health Plan, Oregon’s Medicaid program, to acknowledge that Applied Behavior Analysis (ABA) therapy is a safe, effective treatment for autism that should be covered. For a while, the Oregon Health Plan covered ABA, and for the first time ever, Medicaid kids in Oregon had access to this critically important care.

And then a few months ago the Coordinated Care Organizations (CCOs) started administering OHP benefits. Some CCOs have covered ABA therapy, but others have denied virtually all coverage for ABA.

The autism community told the CCOs and the Oregon Health Authority that refusing to cover this medically necessary care violated a critical component of Federal Medicaid statutes called “Early and Periodic Screening, Diagnostic and Treatment” (EPSDT). EPSDT makes health care for children a national priority, and specifically requires coverage of “all medically necessary diagnostic and treatment services … regardless of whether or not such services are otherwise covered under the state Medicaid plan for adults ages 21 and older.”

Unfortunately, the State of Oregon has asked the U.S. Center for Medicare & Medicaid Services (CMS) to exempt Oregon from EPSDT, to make it easier to restrict coverage for needy children with autism and other health conditions on Medicaid.

Oregon made this request as part of an application for permission to extend the Oregon Health Plan for another five years. We need you to comment on Oregon’s waiver request and tell CMS to hold Oregon to the EPSDT standard. You can do this here:

(I’ve included a sample statement at the bottom of this e-mail that you can use).

For the last 25 years, the Oregon Health Plan has used a unique method to control costs – a “prioritized list” of health services. The Oregon legislature provides funding to cover the highest ranking conditions and services, and services that are “below the line” are excluded regardless of medical necessity. The Health Evidence Review Commission (HERC) creates the list and prioritizes the services, deciding which treatments are provided and which are excluded even when medically necessary.

At the time this system was designed in the late 1980s, funding shortages kept many eligible people from accessing any health care at all, and this alternate form of rationing ensured that everyone received at least some care. Since then, however, national Medicaid funding has increased, but Oregon continues to use the prioritized list to ration care. Oregon’s new Medicaid waiver renewal application specifically seeks permission from CMS to restrict coverage of children to the same prioritized list as adults – making Oregon the only state in the country with the right to withhold medically necessary care from low income children on Medicaid.

Further, the Health Evidence Review Commission (HERC) which creates the “prioritized list” is dominated by representatives from the insurance industry and the same Coordinated Care Organizations that are currently refusing to cover autism. Although Oregon law, and the terms of the Federal waiver, clearly state that HERC shall have one (1) “insurance industry representative” and two (2) “health consumers” – along with ten medical professionals from various disciplines – in practice, several of the seats reserved for medical professionals have been given to insurance company and CCO executives. Worse, of the two “health consumers,” one is a CCO Board member and the other is a professional consultant who advises Medicaid agencies, CCOs, and insurers on health coverage. Neither is a bonafide consumer representative, such as a Medicaid recipient or consumer advocate. The result is that HERC is focused much more on saving money for CCOs than on consumer needs.

For children with autism, all of this has been very problematic. Here are some examples:

Visit limits on rehabilitative care, such as speech, occupational, and physical therapy:

The Oregon Insurance Division issued a bulletin in 2014 declaring such limits to be in violation of the Federal Mental Health Parity law, and has been directing commercial insurers to remove them from their plans. Nationally, CMS has also issued a bulletin specifically declaring that such limits violate both EPSDT and Mental Health Parity and must be removed from Medicaid plans.

When we brought this to OHP’s attention earlier this year, OHP and the Oregon Department of Justice replied that Oregon’s EPSDT waiver permitted it to impose visit limits on rehabilitative care – despite specific CMS regulations to the contrary. After substantial pressure from several attorneys, both locally and nationally from the Autism Speaks Legal Resource Center, the Oregon Department of Justice and HERC acknowledged that these visit limits violate Federal Mental Health Parity laws – but announced that they were deferring compliance until 2017 “because of the impact on CCOs.” HERC staff acknowledged publicly, in an open hearing, that if the state or a CCO were sued in court over denied coverage it would lose, but that the enforcement risk was considered low. Although I testified and urged HERC to consider the impact on health consumers of withholding lawfully mandated care, no such consideration was given.

Age and visit limits on Applied Behavior Analysis (ABA):

The Oregon Insurance Division and Oregon Department of Justice have both declared that age and visit limits on ABA therapy violate state and federal Mental Health Parity laws. In any other state, such limits would also violate EPSDT, for children through age 21. Until July, the Oregon Health Authority honored Mental Health Parity and provided ABA coverage on OHP without specific age or visit limits.

In July, however, the CCOs began administering ABA therapy, and some have been very rigid in imposing age and visit limits on ABA, without regard to medical necessity. Health Share in particular has refused essentially all new referrals for ABA therapy, and has begun terminating coverage for those existing patients who were already receiving care. Family Care has also published a policy that refuses coverage of ABA for anyone who is not dangerous, who hasn’t tried less intensive treatments to prove they won’t work, or for anyone with an intellectual disability – regardless of need.

The national EPSDT statute would ordinarily make it clear that Medicaid eligible children must be given access to medically necessary care. That is why we need to demand that CMS hold Oregon to the EPSDT law like every other state.

Behavioral health care for self-injurious behavior:

The prioritized list includes a specific line (line 442) to provide behavioral health care for self-injurious behavior. This was created by HERC in response to testimony from the mother of a teenage girl with very severe, life-threatening, self-injurious behavior related to autism. Unfortunately, HERC neglected to include any in-patient treatment codes on the list – it only included outpatient therapy. When the teenage girl needed inpatient psychiatric treatment, OHP refused to cover it, even though it was without question medically necessary, simply because it wasn’t on the list. (For more on this case, see: https://www.thelundreport.org/content/oregon-woman-assails-alarming-gaps-care-coordination-between-oha-and-other-state-agencies).

In any other state, the national EPSDT statute should have resolved that by the simple requirement that children on Medicaid must have access to any medically necessary care.

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Oregon’s Medicaid waiver is now up for renewal – and the Federal Center for Medicare & Medicaid Services is accepting public comment through September 30, 2016, at the following link:

We are also reaching out to CMS to discuss this issue directly, but submitting your comments will really help raise their awareness of these critical issues.

I’ve provided a sample message below my signature – please feel free to customize it to describe how you have been impacted.

Please let me know if you have any questions or additional input on this, by replying to this e-mail.

Sincerely,

Paul Terdal

Sample message to CMS regarding the OHP Waiver Renewal Application:

Here’s a basic message that you can use to get started. If you have been personally impacted – either because you are on OHP and have had trouble accessing care for autism (or any other condition), or have patients or students who have had trouble accessing care, you can personalize this by adding a brief anecdote.

Comment Web Page:

To submit comments to the U.S. Center for Medicaid and CHIP Services on the Oregon Health Plan Extension, click on this link below, and enter your comments in the comment box; click “Finish” when done:

Please do NOT approve the extension of the Oregon Health Plan until two critical issues are fixed – regarding the EPSDT Waiver, and consumer representation on the Health Evidence Review Commission (HERC).

EPSDT Waiver:

The EPSDT benefit was created by Congress to ensure that children enrolled in Medicaid receive “the right care at the right time in the right setting” by requiring coverage of “all medically necessary diagnostic and treatment services … regardless of whether or not such services are otherwise covered under the state Medicaid plan for adults ages 21 and older.”

The Oregon Health Plan includes a waiver from this Congressional requirement, permitting Oregon to restrict coverage to only those services on the “prioritized list.” While the original intent may have been to focus coverage on best practice treatment, in practice it has been used to ration care and cut costs by withholding medically necessary care from needy children.

CMS should require Oregon to ensure that its most vulnerable children receive the medically necessary care that Congress intended, without rationing, by making it clear that Oregon must fully comply with EPSDT.

Consumer Representation on the Health Evidence Review Commission:

The Health Evidence Review Commission (HERC) develops the prioritized list of healthcare services. According to the waiver application, HERC is supposed to include “two health consumers.”

In practice, qualified “health consumer” applicants for the HERC were rejected so that a CCO board member and an industry consultant could be seated on the Committee instead, and there are NO bonafide “health consumers” on HERC.

Consumer representation is critical; HERC regularly discusses ways to mitigate the financial impact of its decisions about the prioritized list on CCOs – without genuine consumer representation, there’s very little consideration of the impact on health consumers.

The HERC membership clause in Oregon’s section 1115(a) waiver should be clarified to specify that the “Health Consumers” must actually be bonafide consumer representatives who are either (a) Medicaid recipients, or the parents or guardians of Medicaid recipients; or (b) representatives of non-profit advocacy organizations representing the needs of Medicaid consumers – not industry representatives.